How beating cancer can trigger a new battle
As survival rates soar, thousands are dealing with the devastating after-effects of treatment for the disease
SAMANTHAJACOBShadjustgotmarried when she was diagnosed with a rare bone cancer at the age of 26. After live-saving surgery and chemotherapy, she recovered but the disease and the treatment has left her permanently disabled.
When she i niti al l y received the diagnosis, Ms Jacobs, a former hairdresser from Pinner, in north-west London, says: “It was horrible. I started chemo straight away. I had six rounds and radiotherapy on top of that and I had to have surgery to save my leg.
“Ihadallthebonetakenawayandhad it rebuilt with titanium. Virtually all my leg is metal inside. It changed my life.”
Now 49, and free from cancer for over 20 years, Ms Jacobs has to contend with the physical legacy on a daily basis.
“I can’t work or be on my feet all day. I’ve had to have two more operations on my leg and I have a chronic infection in my knee as a result of surgery,” she explains. “And there is always the possibility of losing my leg. I take medication; I’m still having scans; and I am always kept an eye on.”
According to a recent report published by Macmillan Cancer Support, more than 625,000 people in the UK who have survived cancer are facing poor health or disability after treatment.
The charity, which provides information and support to thousands of cancer sufferers, says 116,000 patients did not have the long-term side effects from their cancer explained to them properly.
Stuart Caplan, 66, a member of Western Marble Arch synagogue from central London,recallshowhehadtoteachhimself to speak and swallow again after surviving tongue cancer.
“It was strange and scary,” he says. “I’d never heard of tongue cancer before. I never imagined that something like this could happen.”
After surgery, it took three years for Mr Caplan to be able to speak, eat and drink. The recovery process, as he Samantha Jacobs with her daughters Ruby ( left) and Amber. Treatment for a rare bone cancer has left her disabled explains, has not been easy:
“I still suffer with cachexia, a post-cancer treatment condition which causes weight loss, fatigue and many other effects as a result of cancer treatment.
“I’ve lost most of my sense of taste, and eating, drinking and swallowing are still a challenge, although I now know how to manage them.
“I also had to teach myself how to speak again, as speech therapists didn’t have the ability to do so to my expectation or standards.”
Mr Caplan, a business consultant for a financial services and wealth management company, says support from Jewish charity Chai Cancer Care has helped him and his family cope with the psychological as well as physical after-effects of the illness.
“During treatment, one is cocooned in cotton wool. Suddenly, at the end of treatment, this stops and the patient is left hanging there. Rather like a leap off a cliff,” he says.
Through Chai, he has received complementary therapies, including acupuncture, lymphatic drainage massage and reflexology.
“Thelymphaticdrainagemassagehas helped reduce the swelling around my neck and throat, he reveals, adding that, “reflexology is an important therapy for mebecauseitenablesmetomanagethe anxiety, stress and concerns surrounding the possible return of cancer.”
In its report, Macmillan states that the “extraordinary”numberof cancersurvivorscould be attributed to better treatment and an ageing population with more older people at risk from the disease.
Lisa Steele, Chai’s chief executive, reports that the charity has been seeing increasing numbers of clients, with a current total of 2,370.
“It is important Macmillan has published the report,”she says, “but it is not new to us. Chemo can often leave people with all sorts of side-effects and they have to live with the impact of cancer for the rest of their lives.
“Inthepastfiveyears,wehaveseencancer become a chronic disease rather than a terminal one in many cases.
Ms Steele adds: “You’d be mistaken for thinking people only come to us when they are sick. They often come after because t h e y d o n ’ t know how to p i c k up t he pieces.
“When you overcome cancer, friends and family want people to go back to the way they were but that isn’t possible.” Stuart Caplan
According to Dr Adrian Tookman, medical Director of Marie Curie Hospice and chairman of Chai’s medical patrons, doctors are sometimes “poorly equipped” to deal with the long-term impact of treatments on cancer patients.
“The challenge for clinicians in the future is not to overlook these longer-term disabilities, to listen to our patients and to develop innovative strategies to support and rehabilitate people and their families,” he adds.
After having breast cancer twice, Jane Parkus, 48, underwent a double mastectomy, in the hope that it would reduce her chances of getting it again.
“Onceyoufinishyourtreatment,people expect you to get on with life,” she explains. “And when you are out of the battle with it you think, ‘what do I do now?’ Your job has been dealing with the cancer and you have to get used to a new normality.”
Mrs Parkus, a member of Edgware Adath Yisroel Congregation, says community support was crucial. “When I washavingtreatment,peoplemademe meals every day. There was a rota set up and if I wanted help it was there. I used Chai and I went for massages and I used their counselling service when I went back to work.
“I suffered from tiredness and sickness and aches and pains for months after. Even now, I can’t have injections in one of my arms, as I’ve had some lymph nodes removed.” Despite increased survival rates — with 78 per cent of breast cancer sufferers living 10 years or more after diagnosis, according to Cancer Research UK — the worry remains.
As Mrs Parkus says: “You can’t just put it in a box and forget about it, even when you are cancer-free. There is always the fear it will
return.”
Virtually all my leg is metal inside. It changed my life ’